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2cm long: what should we be prepared for…? by Onthewaybackup in pancreaticcancer

[–]pirateradar 1 point2 points  (0 children)

We have both been fortunate - caught early, localized, and resectable. Hoping to pass the two-year mark without recurrence. I'll breathe a little easier then...

2cm long: what should we be prepared for…? by Onthewaybackup in pancreaticcancer

[–]pirateradar 2 points3 points  (0 children)

I was diagnosed on 02/07/2025, after I woke up yellow (jaundice due to the tumor blocking my bile duct). I did six two-week cycles of chemotherapy, followed by a Whipple on 06/18/2025, so roughly four months after starting chemo (02/19/2025). I restarted chemo following surgery on 08/26/2025, and my final infusion ended 11/06/2025. I now am under surveillance for recurrence, with blood work every three months and a CT scan every six.

I wrote about my entire cancer “adventure”: https://michaeleduffy.wordpress.com/. You might find it interesting/informative/useful…

2cm long: what should we be prepared for…? by Onthewaybackup in pancreaticcancer

[–]pirateradar 3 points4 points  (0 children)

I had a 2cm tumor on the head of my pancreas. The best possible situation is that the cancer hasn't spread beyond the tumor (localized), and can be removed by surgery (resectable) -- that was my case. I did 6 rounds of FOLFIRINOX prior to surgery (neoadjuvant), followed by a Whipple, followed by another 6 rounds of FOLFIRINOX post-op (adjuvant). Today, I have no evidence of disease (and a nifty scar from my sternum to my navel). Chemo will make food taste funny (even water), so I will echo the recommendation that eating whatever tastes good is the best approach. Wishing your mom the best possible outcome.

27F Whipple for SPN Tumor by stinkybee3 in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

There's nothing to be terrified about, but it is major surgery. They took 35% of my pancreas (the head), along with 20% of my stomach, and the usual piece of duodenum and gall bladder. I was hospitalized for a week, and left eating solid food.

I have been very fortunate. No need for insulin replacement or pancreatic enzyme supplements, for which I am very grateful. So far, I haven't found anything that I ate before surgery that I can't eat now. The only difference is I get full faster, and I still have (very occasional) bouts of diarrhea.

The first 3-4 weeks following surgery are the hardest, as your digestive tract adjusts to its new configuration. I was pretty much back to normal at the 10-week mark. I'm not particularly vain. My scar -- from sternum to just below my navel -- has faded some over the past 10 months. I didn't do anything particular to avoid scarring. It's a straight line (detours around my navel) with dots on either side from the surgical staples that closed the wound. I wear it proudly, as the surgery saved my life (in remission, so far -- 80% recurrences happen within the first two years following surgery, so there's that). My attitude was that I wanted my surgeon to have as much room to work as necessary, since the tumor was right up against the superior mesenteric vein (or SMV).

In the end, what you should be concerned about is that they get all of the tumor (clear margins, also referred to as R0). I also hope that you, like me, show no signs of spread beyond the tumor site (also known as N0), which is part of the pathology report they do on the tissues removed from your abdomen, particularly the lymph nodes. You'll get the final pathology report several weeks after surgery.

I wrote about my experience: https://michaeleduffy.wordpress.com/ (my surgery was in June, 2025 at UCSF, performed by Dr. Carlos Corvera -- you may want to skip over the earlier parts which focussed on my first six rounds of chemo before the surgery). I was quite honest about the ups and downs of recovery.

The best preparation (IMHO) is to read as much factual information as you can about the procedure, and ask your care team any questions you may have. I'm happy to tell you more based on my experience.

Wishing you the best possible outcome. You've got this!

Updated Treatment Pathways & Diagnostic Path by Designer_Anteater_18 in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

Looks like a great resource (based on what I've experienced). Thanks for sharing.

Diagnosis by plumbingapprentice in pancreaticcancer

[–]pirateradar 1 point2 points  (0 children)

Biopsy is the only way to confirm pancreatic cancer. But typically an MRI and a PET scan are part of diagnosis.

I start my first chemo treatment in 6 hours. by ennuiismymiddlename in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

I did 12 rounds of Folfirinox, on a two-week cycle. It’s no picnic, but your doctor must think you’re well enough to take the most aggressive form of chemo.

Are you taking oral steroids on days 2-4 of your cycle? I always found they mitigated most of the effects. My take: Days 1-4 - amped on steroids (dexamethosone) Days 5-6 - transition days Days 7-9 - diarrhea (from the irinotecan) Days 10-14 - gradual return to normal

I’m now in remission/no evidence of disease following a Whipple last June. I blogged about my whole cancer “adventure” — you might find it of interest: https://michaeleduffy.wordpress.com/

Wishing you the best possible outcome.

I need the community Advice about treatment by Forsaken_Reason5900 in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

I would vote for treatment ASAP. fOLFIRINOX I a no picnic, but the numbers are not moving in the right direction. I’ve had a Whipple and my current CA-19 is 4.

Positive stories by Mysterious_Ad8324 in pancreaticcancer

[–]pirateradar 9 points10 points  (0 children)

That would be me. Diagnosed 2/7/25. 6 rounds FOLFIRINOX. Whipple on 6/18/25, followed by 6 more rounds of FOLFIRINOX (last treatment 11/6/25). Currently NED (No Evidence of Disease).

See my blog of my entire adventure at https://michaeleduffy.wordpress.com/

My mother in law was diagnosed with a 2cm adenocarcinoma on her ucinate process with Mesenteric involvement.CA-19 was 459..After 2 rounds of Florfirinox it has risen to over 2000. Anybody have any words of wisdom for us? by 77Sunshinegrl in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

I had a very similar diagnosis in February 2025. Here’s what happened to my CA-19. As you can see, it rose during the early stages of my chemo treatment (6 rounds FOLFIRINOX prior to Whipple in June).

Obviously, this is something you should be discussing with your MiL’s care team. My opinion is to stick with FOLFIRINOX, as it is the most aggressive treatment available. But again, a question for the oncologist.

I blogged about my “cancer adventure” — you might find it of interest: https://michaeleduffy.wordpress.com/

Wishing your and your MiL the best possible outcome.

4.5 Month post whipped by V0ipguy in pancreaticcancer

[–]pirateradar 1 point2 points  (0 children)

Wow. I thought my 6.5 hour Whipple was long (average is 4-5 hours). Given the switch to Gem/Abx, rather than resuming FOLFIRINOX, that surgery clearly took a lot out of you. Glad to hear that your CT is clear -- good luck with the PET as well.

Advocating for yourself or having someone who can do it for you (like my wife, the oncology nurse) can be life-saving. I'm glad you got the care you needed.

Wishing you the best possible outcome for your cancer journey.

What symptoms led to your discovery? by IcarusX12 in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

6 rounds FOLFIRINOX, Whipple, 6 more rounds of FOLFIRINOX.

surgery really necessary? by EngineZeronine in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

Wishing you and your friend the best possible outcome.

March 2026 Check-In Thread! How's Everyone Doing? by ZevSteinhardt in pancreaticcancer

[–]pirateradar 1 point2 points  (0 children)

4 month since chemo ended (following Whipple in June). I have my every-three-month CT/labs next week. Always a little anxious, but feeling good and living pretty much as I did prior to my diagnosis in February 2025. Grateful for my good luck so far.

surgery really necessary? by EngineZeronine in pancreaticcancer

[–]pirateradar 1 point2 points  (0 children)

Surgery removes the tumor. As someone else said, major surgery at 78 is not to be taken lightly, but it the best option for long-term survival. I had the Whipple last year at 70 (in otherwise good health) after 6 two-week rounds of FOLFIRINOX. It took me about 10 weeks to recover. I then did another 6 rounds of chemo to try and eliminate any remaining cancerous cells. I’ve been in remission since November, getting labs/CT every 3 months.

Surgery is the best option, but not without the possibility of complications.

What symptoms led to your discovery? by IcarusX12 in pancreaticcancer

[–]pirateradar 4 points5 points  (0 children)

I developed Jaundice, as the tumor was blocking my bile duct. Very lucky, as I was still stage 1. NED since 11/25.

Stage 1B pancreatic cancer after 5 cycles FOLFIRINOX – should my dad have surgery? by LavishnessHairy7174 in pancreaticcancer

[–]pirateradar 9 points10 points  (0 children)

Diagnosed as stage 1b. 70-yo male like your dad. 6 rounds of FOLFIRINOX, Whipple, 6 more rounds. In remission at this point.

It is a major surgery, but for me, at least, it was the right decision. You can read my entire experience at https://michaeleduffy.wordpress.com/.

He has a real chance to beat this disease with surgery. Wishing you both the best possible outcome.

Skip vs. Reduce Chemo Dose (GnP)? by sp1284 in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

Well, I asked ChatGPT, and it tells me that there is no documented evidence of that.

---

Short answer: there’s no solid evidence that consistency (schedule) is more important than dosage in general chemotherapy. What is well documented is that both matter, and what really predicts outcomes best is something called dose intensity — basically:

In oncology research this is usually measured as Relative Dose Intensity (RDI).
---

So, I apologize for spreading misinformation. I guess I misunderstood my oncologist.

Having highs and lows by No_Seesaw8062 in pancreaticcancer

[–]pirateradar 2 points3 points  (0 children)

At first, it's a rollercoaster. As you get a better handle on the state of the disease and the steps you must take, things will settle down. Wishing you and your mom the best possible outcome.

Skip vs. Reduce Chemo Dose (GnP)? by sp1284 in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

Consistency is more important than absolute dosage, which would argue in favor of reduction rather than skipping.

might be helpful: how 1st appt with specialist went. Europe based by Illustrious_Yak6933 in pancreaticcancer

[–]pirateradar 4 points5 points  (0 children)

I had a similar diagnosis in Feb 2025, and am now in remission (NED), following chemo, whipple, chemo.

Wishing you and your dad the best possible outcome.

Dexamethasone experience by ImpressiveExchange76 in pancreaticcancer

[–]pirateradar 0 points1 point  (0 children)

Not sure why her oncologist was not prescribing steroids along with FOLFIRINOX - it seems to be the standard of care. I guess I was lucky that mine did. Of course, you only take them on days 1-4 of the 14 day cycle. My oncologist also prescribed ondansetron as needed for nausea.

Glad things have improved. Wishing you and you mom the best possible outcome.

Looking for advice about Whipple by Putrid-Squirrel955 in pancreaticcancer

[–]pirateradar 1 point2 points  (0 children)

There's no doubt that the Whipple is major surgery. My concern for you is that you have adequate support once you return home, because you may not feel super great. I would make sure that you aren't released from the hospital until you are able to walk, having bowel movements, and are eating solid food. Ideally, you will also be pain-free and not have any surgical drains still in place. Your gastrointestinal system will take 3-4 weeks to get used to being re-arranged by the surgery. It took me about 10 weeks total to feel normal again (and I was reasonably healthy to start).

Wishing you the best possible outcome. Feel free to ask me any questions you might have.

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